Health Organization for Pudendal Education

My hip doc is located in Portland at OHSU.
I did not mention PN at the consultation - mostly because of the stigma. I did, however, explain all the pn type symptoms that happened prior to/in conjunction with hip pain that led me to her office. She and her PA seemed a little dumbfounded that I was not in terrible hip pain, but did seem concerned about the very limited ROM and pain during exam. I asked her frankly if she had seen a correlation between vulvodynia and hip pathology in her professional career and she said no - never.
Big red flag for me. I have done a lot of homework on the subject, and my pn aware PT knows about this connection as well. So if a specialist orthopedic hip surgeon has never even heard of the correlation, obviously I'm not going to continue seeing her.. I did think it was important to at least rule out the posiblity of labral tear before seeing someone else who is pn aware. Waiting for the results next week and then going from there.

Any good resources for hip orthos who are pn aware? any in the midwest or westcoast??

I think the only PN-aware hip preservation surgeon around is Stuart Coleman in NYC. Dr. Zaltz in Michigan (city?) is currently treating another PN patient so he might understand the connection. But you probably should NOT choose a hip surgeon based on whether or not they know about the PN connection, but rather on whether or not they are renown in their area of expertise, namely, arthroscopic labral hip repair. You are wise to keep the PN stuff to yourself (or at least not to dwell on it) since it does tend to confuse them.

I think I saw a recent post of yours on Hip Chicks? I sent you a friend request there; that is the only way to PM each other on that site. Don't forget to join the Pelvic Pain Hipsters Group! There are many PNers there.

Thanks Lernica

I did post something on Hip Chicks and I did get your friend request
Thanks for friending. Not sure how friendly that environment is yet.
I will take your advice and not choose a surgeon based on how pn aware they are. I do agree I should try and seek out the best of best tho.
I'm just so miserable this last few days after the MRA - with the added pain and discomfort and not knowing if there really is hip pathology or not, or if i've harmed myself even further by getting this injection done
My hip was never this bad before Thursday. I don't know how sinovial (?) joint fluid works and neither the lab or the surgeons staff were very forthcoming with answers to my questions/concerns regarding my discomfort and hip popping. I just want some answers - I tend to have very high anxiety regarding all this and I'm not currently medicated and coming off Cymbalta so I'm a hot mess at the moment. Thanks for bearing with me.

IMO your increased hip pain is a good sign! It means there might be an easily-addressed cause for your PN pain, namely, labral tear repair, rather than risky PN surgery. Plus, you have not injured yourself by having an MRA! Please keep that in mind.

If you're a "hot mess" maybe now is not the right time to come off Cymbalta?

My insurance won't cover the cymbalta - they require me to try at least 2 other "step 1" meds before they will cover it. Basically I have to try two different types of antidepressants in the hopes that those will ease nerve pain. In the event they weren't effective, then and only then, will my gp send the proper paperwork required for my insurance company to cover it. It costs nearly $300 for a 30 day, low dose supply. Unreal. I refuse to play ginue pig with myself like that, and coming off cymbalta is a uniquely difficult endeavor in comparison to coming off other antidepressants, and I've been advised to ween very slowly and not combine additional meds while doing so. Trust me, I want nothing more than serious medication right now, but I'm stuck in purgatory at the moment.

Thanks for the encouraging words regarding the hip and mra. It's really great to come here and get some perspective and encouragement from people who can relate
I agree, a hip surgery is much much much more appealing than the pn surgery.

I see the ortho next month - I will keep current on the results and follow up diagnosis when it comes.
Thanks again do much to all the lovely ppl on this forum. All my love, and happy holidays .

pizzarios wrote: I'm not currently medicated and coming off Cymbalta

Why are you coming off the cymbalta, hon? Is it because of the insurance issue? How did you get the original script?

pizzarios wrote:My insurance won't cover the cymbalta - they require me to try at least 2 other "step 1" meds before they will cover it. Basically I have to try two different types of antidepressants in the hopes that those will ease nerve pain. In the event they weren't effective, then and only then, will my gp send the proper paperwork required for my insurance company to cover it.

Is there any way you can get your GP (or someone else) to write your insurance company a letter stating why this particular med would be in your best interest? My heart goes out to you for lots of reasons, but to have your insurance company decide your medication, with your medical condition is just plain wrong.

pizzarios wrote: I don't know how sinovial (?) joint fluid works

My understanding of synovial fluid is that it lubricates the cartiledge and joints. Additionally, it's the fluid substance which leaks from torn, damaged joints and ligaments. Once this occurs, it ossifies, resulting in osteoarthritis.
I hope your pain subsides soon, Pizz! I've noticed that some people who've had the arthogram didn't have much of a problem with the injection and some had a similar experience to what you're going through.

pizzarios wrote:I see the ortho next month - I will keep current on the results and follow up diagnosis when it comes.

Best wishes with your appointment. We're looking forward to hearing how things are going for you!
Kind regards,
Karyn

My GP knows my situation and will not make the extra effort to write my insurance company. I agree that it is totally effed up that they are deciding which meds are best for me. My GP wrote a rx and gave me samples of Cymbalta because I had mentioned that other PNers seemed to have success with that particular drug and she obliged to problem. I originally tried to get my Pain Management doc to give me some but he wanted me to come in for an appointment first (which costs $200 a pop), so I just said screw that and went with the cheaper option to ask my GP.

The person I spoke to on the phone regarding this added pain/discomfort in the hip at the ortho's office was a real jerk and seemed to dismiss everything I described and shooed me off the phone. The imaging center said something along the lines of "yeah i guess this could happen??" - really not thrilled about the feedback I'm getting and the Ortho won't see me until end of Jan.

I have been in tears for the past few days and my husband just told me "You're fine - you're just feeling sorry for yourself."

And now I'm starting to wonder if he's right, or if he's just being a total asshole.
Merry Christmas.

My vote is A-hole.
In fairness to your husband, we're fortunate to have this place to communicate with others who understand. We all like to think we're bottomless pits of compassion when it comes to pain. But the truth is; if I never experienced this kind of pain before, I wouldn't fully understand, either. Although not helpful, it's possible the statement he made to you was an actual attempt at comfort. For himself, as much as for you.
I am so very sorry you're not getting the support you need (and are entitled to!) from your GP. I find it a bit upsetting that she would prescribe a med for you, and then not back it up. I do understand most MD's hands are tied in some situations with the insurance companies, but you would think they'd allow the physicians to prescribe appropriate medication! I'm also horrified by the way you were treated with the Ortho's! I think many of us have been treated this way at one time or another. It's a really crummy feeling.
Are there any other ortho centers local to you?
Hugs,
Karyn

I don't have much advice about the Cymbalta etc. but I second Lernica's idea that you should choose a surgeon based on his/her ability at fixing the hip regardless of their knowledge of PN. The way I see it the Ortho is going to avoid nerves, veins etc. whether their patient has PN or not. Plus if it is your hips causing your pain then you want the best person doing the work. I also agree with Lernica that more hip pain may in fact be a good sign. When I found out that I had FAI etc. I was elated as I figured maybe I finally had a clue to all of my symptoms. Like you I never had hip pain but still had all sorts of PN issues. It wasn't until this year that my hips began bothering me and even then it isnt too bad despite my Ortho saying that the labral tears look pretty bad.

I went to Dr. Potter last week and the results are Varices in the pelvic floor. Found a few things on this site but not much elsewhere. Either way I am getting my left hip operated on the 10th of January. I was curious Lernica, how out of it are you after the surgery? I have 3 flights of stairs to manage so I want to make sure I'm with it before making that climb.

Are you still progressing I trust?

Well kind folks, got the interpretation from my local radiologist regarding the hip MRA.

There is a defect along the base of the anterosuperior labrum through which contrast extends towards the perilabral sulcus. The remaining labrum and capsular ligamentous structure appear intact.

...I have a damage to some area of the hip labrum, I gather.
I am equal parts relieved, elated, sad, apprehensive, scared, and still depressed. I am in no position to get surgery right now, for a few reasons.

Obviously I will get a second opinion. I still have yet to meet with the ortho to get her take on the films. I have lots of my own homework to do.

We all like to think we're bottomless pits of compassion when it comes to pain. But the truth is; if I never experienced this kind of pain before, I wouldn't fully understand, either. Although not helpful, it's possible the statement he made to you was an actual attempt at comfort. For himself, as much as for you.

Thank you Karyn, for this ^ perspective. That is a very practical and logical way to interpret all the silly human reactions to these things. Lets just say, today I imagine he fills like quite a shit, what with all the on the heals of getting some concrete evidence that I have an injury.

Not sure about medication at this point. I'm sure the ortho will want to thrwo NSADS (?) at me. they don't work. I think something for the morbid depression is more practical than pain meds at this point. That requires another doctor....bloody hell. I may just beg my GP for something long term. She's a good doc, but just really not experienced with things like this (and why would she be, she's just a gp) and willing to work with me to a degree.

I will keep all of you fine folks updated. Any good pedestrian (non md) resources would be greatly appreciated

Love all you guys. Honestly. Happy boxing day.